A Royal Reflection

 

Dear Diary,🫅👑👑

Watching The Crown today has pulled me back into a very specific memory. 1981.

While the world was focused on the wedding of the century, it was also the International Year of Disabled Persons. I was just a young girl then, but that was the year I actually met the Queen. I wore a flowery dress with my hair in bunches held with red ribbon and sandals.

It’s strange to think about now—me, a little girl with CP, standing before the woman I'm now watching on my screen. I’ve always felt a strange connection to the Palace; after all, I share a birthday with the man who is now our King.

In 1981, the theme was "Full Participation and Equality." I remember the excitement of meeting Her Majesty, but I also remember the reality of the 80s—the heavy boots, the lack of ramps, and the feeling that the world wasn't quite built for me yet.

Forty-five years have passed since that meeting. I’m still the same girl, just older, managing the "Double Whammy" of CP and Stage 4 Endometriosis. We’ve traded 80s fashion for digital blogs and mochas in the recliner, but the mission is the same: just trying to participate fully in a world that still has a few steps to climb.

love 💗

The Invisible Flare

 

 

Dear Diary,

It’s officially CP Awareness Month. The world is turning green to support people like me, and I’m proud to share that part of my life. But today, my diary entry isn't about the green ribbon; it’s about the silent war.

I have Stage 4 Endometriosis.

Most people see the CP—the way I move and the physical effort of my gait. But they don't know what Stage 4 does behind the scenes. It’s the "Double Whammy."

When the Endo flare hits, it’s like a chain reaction. The internal pain triggers the spasticity in my legs, and suddenly, my CP is ten times harder to manage. My muscles lock up because they don’t know how to handle the deep, internal "grrr" of the Endo.

I have to be the Manager of two different wars at once. One is visible to everyone who walks past, and the other is a silent, deep battle with scar tissue and pain.

Today, the heat pack is my best friend. I’m sitting in my recliner, just trying to breathe through it and balance the needs of two very different conditions.

People ask how I do it. I don’t have a fancy answer. I just do it because I have to. One breath, one poem, and one day at a time.

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Support Groups

• Endometriosis UK: Leading charity in the UK. Helpline: 0808 808 2227.

• The Endometriosis Network (UK): Specialised support for complex decisions.

• Scope & CP Sport (UK): Advice on managing disability and health.

Note to international readers: Please look for support groups in your own countries. I can’t be certain of every single one, but you don't have to manage this alone.